The site, healthdatarights.org, is endorsed by a wide variety of players, including physicians, researchers, software firms and consumers. Supporting organizations include Partners Healthcare, Microsoft, Google, WebMD and the Association of Cancer Online Resources, among many others.
The site features a “Declaration of Health Data Rights,” which states: “In an era when technology allows personal health information to be more easily stored, updated, accessed and exchanged, the following rights should be self-evident and inalienable. We the people:
* have the right to our own health data;
* have the right to know the source of each health data element;
* have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost; if data exists in computable form, they must be made available in that form; and
* have the right to share our health data with others as we see fit.”
Acknowledging that the federal HIPAA rules protect records privacy, the site states: “We know that too often ‘privacy’ is used as an inappropriate excuse to keep people from gaining access to their own health data and information, which they have every right under HIPAA and most state laws to view and access. This incorrect interpretation of HIPAA then becomes an abuse of the very rights that HIPAA seeks to protect.”
--Howard Anderson
Be the first to comment on this post using the section below.